This has been a tough weekend despite the Easter celebrating my children are looking forward to on Sunday morning. My very best friend is going through one of the most traumatic experiences I would never wish upon her. A baby girl was born on April 15th and was referred to my friend as they were at the top of the list to adopt a child. The family brought the new baby home on Monday, and oh how we rejoiced when we heard the news! But, today, that baby is in ICU with heart failure preparing for open heart surgery. My own heart aches for this family as do my arms. I want to take all their pain away, and I long to embrace them. Fortunately, countless friends and family are fervently praying and hoping immediate medical care brings this week-old child to better health.
In the midst of my frequent phone calls, emails and text messages about the baby, I have learned more medical and technical terms unrelated to anything I’ve every read. The human heart is one very complicated yet amazing organ. In the past so many people have said that I should carry some sort of medical degree or certificate for everything I’ve taught myself and understood as it relates to my son Ronan’s medical problems. I got a schooling in all things pediatric cardiology over the last two days, and I appreciate how intricate the body is. I also appreciate how precious time and life really are.
Through the worry and fear in my friend’s voice during our phone calls I have felt the strength of her faith at the same time. The baby has been brought to a well regarded cardiologist and his team so new hope resonates as I get updates. It is clear that the baby is in great hands in the hospital because of the knowledge my friend quickly gained during every procedure and issue that arose. I am humbled that in this very real crisis, the professionals who are walking, talking and guiding my friend and her family are open, honest, sincere and so willingly giving for a tiny baby who only just arrived in the world.
This same friend has witnessed Ronan being rushed to the emergency room. She’s heard about the very invasive tests, the poking, the prodding, the medical mysteries we’ve solved for Ronan and the neglect we’ve experienced by our own team of doctors. I have more of a sour taste in my mouth for certain medical departments because of what has and hasn’t happened to Ronan. I treaded lightly in a conversations about the baby’s doctors and nurses. The baby needs intensive and round-the-clock care and I prayed the hospital staff were not just helping the baby but also my friend and her husband through these very trying days. My friend said, “Cat, we have a diagnosis for the baby. We know what is wrong with her and we know what can and what will hopefully happen to fix those problems. You didn’t know what was going on until you figured it out for Ronan.” Wow, she is so right. I sat back and let some of my worry fade as clearly the baby’s parents and medical team are working together.
While I ache to be there with my friend, to hold her and her brand new child, I sit hundreds of miles away waiting for the good news I’m praying is coming. No one knew who this little girl was before she was adopted just a few short days ago. No one knew she’d have the extensive medical problems she had. No one knew how powerful her presence was going to be until she arrived. Just like the children in our autism community, no one knew how powerful their needs would be or how close we’d all become because of those needs.
As I welcome what will hopefully be a most glorious Easter morning, may we all feel some sort of peace in the mission we are doing for our children. May we continuously hope for them and as well as for ourselves. May we share the joys as well as the sorrows so that other families know that with a lot of work and yes, even with some pain, success is possible. We might not feel that success instantly ourselves, but another person learning and living through our experience certainly can.
If Easter morning brings you chocolate bunnies, a church filled with praise or is just a regular day in the life of your child, may your hearts and mind be filled with everlasting hope. In just a few short days, my friend is thankful for the chance to parent her very young child who came with major medical problems. I will draw upon her strength and be thankful for another day in the life of my child. I hope to find an inner peace and keep it close in my heart. For that chance to hope, I am truly grateful.
Cathy Jameson is a Contributing Editor for Age of Autism